Monday, January 24, 2011

In May 2007 .... one of the worst nightmares a parent could have happened to one couple.... Their beloved son, Kaleb, who was their pride and joy, was hurt by the person they trusted to take care of him.

Like any responsible parents, Kristy and Josh Schwade wanted what was best for their only child, Kaleb. They did a background check on their day care worker, and even interviewed her in her home for two hours. Kristy was even willing to drive 20 miles out of her way to provide, what they thought to have been, "optimum" care in a good neighborhood.

On May 9th, 2007 their worst nighmare was brought to fruition. After being in the care of this home day care worker only five times, Kaleb was picked up by his Grandmother and Aunt. They noticed that he was lethargic and experiencing obvious breathing abnormalities. The caregiver told them he was ill, but Kaleb had just visited the doctors the day before and was given a "clean bill of health". When Kristy arrived at her mother's home to pick Kaleb up, she described him as "having no life in his body". She tried repeatedly to wake him, but with no avail. She and her father got in the car and rushed to the hospital. While in the vehicle, Kristy lifted Kaleb's little eyelids. She noticed that his pupils were different sizes. Being the wife of an EMT, she knew immediately that this was the sign of a head injury- Kaleb needed IMMEDIATE care. They stopped at the nearest firestation. The ambulance took him to the nearest hospital, and he was classified as a "trauma alert". He was then life-flighted to Tampa General Hospital, and was admitted to the Pediatric Intensive Care Unit (PICU). He was diagnosed as having Shaken Baby Syndrome. They also discovered that he had been SMOTHERED!

Kristy is not currently working, and she and Josh spend every possible moment by their young son's side. Medical bills, cost of gas, lawyer fees (I assume they will begin building), and general living expenses are mounting.

When something happens to your child, your world STOPS. Suddenly it doesn't matter that your "roots" are growing out and you are getting split ends. It doesn't matter that your neighbor is parking his dumpy car in your parking spot. You no longer care that someone cut you off on the highway, or that someone jumps infront of you in line at the grocery store. Nothing else matters but your child.

Kaleb is their world. The doctors. The PICU. It's all that matters now.

This family is not asking for anything other than your prayers.

This situation has become widespread because a friend of Kristy's decided to forward her bulletin asking people to pray for the family. PLEASE support them by spreading the word about this page. The more people who are aware, the more people who have the opportunity to bless this family.

Thank you for viewing this page, and for supporting Kaleb and his family.

Oh, and many of you have been concerned whether or not the sitter has been charged. YES charges have been pressed, but she is currently out of jail on a $5,000 bond.

Below is Kristy's original bulletin posted shortly after the incident.

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Hello everyone...

I write you this message in grief in faith.

My son Kaleb was rushed by ambulance to the emergency room on Wed. after we picked him up from the babysitters house. At UCH they determined that Kaleb had a SubDural Hematoma (His brain is bleeding). He then was Bayflighted (helicopter) to Tampa General Hospitals Pediatric Intensive Care Unit on a Trauma Alert.

Doctors determined that Kaleb was shaken while at the homecare he goes to. He is suffering from Shaking Baby Syndrome.

When we first arrived at the hospital they put a pressure gage into his head to moniter the Intercranial Pressure (The pressure that the brain is under due to swelling and Bleeding). He wasn't doing too well all day yesterday, his pressure in his head was ranging between 29-40 and the normal pressure is between 5-20. So doctors decided that the best thing to do was to put a tube into his brain to drain spinal fluid from his ventricle. This procedure was a sucess and brought the pressure down.

Today however, they did a Cat Scan and saw that Kaleb is now suffering from a stroke and has formed a new bleed in the brain.

I believe in Miralcles! I believe that prayer works. I am asking you, all of my friends, whether you know me well or not to PLEASE pray for my little boy Kaleb. He needs a miracle and we need your help!

I know some of you may not believe in God... But he exists! And he's already performed one miracle. Please I ask you, I beg you, to Pray for my little boy and my family. He is my everything

********* I followed the story closely, writing Kristy several times.... My heart broke for them, I had just had Nathan right before this happened... and I prayed a lot for that little boy. I was excited on the good days, and worried and sad on the bad days, praying all the while.

Tonight - however .... just a few hours ago......... Kaleb became an Angel.

Kaleb's story touched so many people, touched so many lives.... grabbed so many hearts... on Myspace and Cafemom.... and anyone who heard the story....

Kaleb feels no more pain, but his poor parents are missing him greatly. Kristy posted this on her Myspace:

Kaleb's last update.Jan 24, 2011 Hi Everyone.

First off I would like to say thank you for all of your prayers throughout the years.

Kaleb went to heaven today at 5:08pm. He is now an angel and has been given the strength to walk and run and play with the other children angels. His death was very quick and he seemed very comfortable. I cannot express the gratitude for all of you and your support throughout the years. We find peace knowing that Kaleb is in heaven with Jesus and feels no pain.

Thank You

Here is a WONDERFUL interview done with Kristy August 2010 (the above picture was shared there) ....

The first picture I shared, was taken from Kristy's Myspace - from one of their fundraising events....... I thought, it was fitting.

Do not stand at my grave and weep
I am not there; I do not sleep.
I am a thousand winds that blow,
I am the diamond glints on snow,
I am the sun on ripened grain,
I am the gentle autumn rain.
When you awaken in the morning's hush
I am the swift uplifting rush
Of quiet birds in circling flight.
I am the soft starlight at night.
Do not stand at my grave and cry,
I am not there; I did not die.

Kaleb - I hope that you are running and laughing and talking up a storm! Enjoy Heaven baby boy!! You touched so many lives!!

It’s funny, some days, how people perceive you. Some days, people look at you like you gave birth to a monster, and others, people feel the need to tell you how strong you are. What they don’t understand is being a parent of a child with special needs has nothing to do with strength.

I personally dislike the phrase “special needs.”Every person has a few special needs, a certain type of bottled water they prefer, the need to feel superior, or just those who enjoy not being noticed.They are all special needs an individual has to cope with feeling comfortable. My children, they are unique!

My middle two boys are my medical miracles.I have one child born with a rare disorder called Mosaic Trisomy 16, and was only one pound twelve ounces when he was born.The Doctors, I was told later, pretty much had no hope of him having any quality of life.However, he is 9 years old now and proved them all wrong.Does he have hurdles, of course he does, but nothing like they tried to make me believe he would. Then my 3 year old came along and he has what seems like a never ending list of medical stuff going on, from Autism, to missing part of his brain, to having a type of dwarfism, and more.The thing I hear the most:

YOU ARE SO STRONG!

Yeah, not so much!It has nothing to do with my strength.It has more to do with supporting my

children and being there for them.Doing everything that needs to be done to make sure they have a good life.Having a wonderful support system, and finding outlets for myself and my family to create a type of normality.Most of all, it comes right down to love.LOVE is the key to it all, you’ll do anything for love.

Most parents of kids with unique issues would give anything to trade places with them, to protect them from the pain, and let them live in the innocence that most children get to experience in whole.Most of us don’t break down until we’re behind closed doors, because we don’t want our children to see how much it affects us, because it’s not about us.All parents just want to protect their children.Unfortunately, those of us who have unique kids, we have to sit back and watch them go through things no child should have to.We have to be their biggest cheerleader, their support, their parent, their friend, and sometimes their nurse.

So what about us parents?How can we survive all this and not just fall apart.It’s all about a few key things.

·Trusted Doctors

·Wide Support System of Family & Friends

·Taking some ME Time.

And when one of those things isn’t in place, everything just feels off balance, so it is important to find that balance.

If you don’t like your doctor, keep looking!We have gone through a few that we didn’t like, but for the most part, we have found a lot of wonderful people in the medical field.Having that support system is very important.Family, Friends, Church, even strangers will come up and offer help, there is nothing wrong with taking it!It is sometimes hard to do, but you will need to take it.Practice saying YES, instead of NO … followed with “we are doing okay.”It’s okay, to not be okay!Finally, finding some time for yourself is usually the hardest.I know I’ve gone days where I don’t eat and it suddenly dawns on me when I’m not feeling well at the end of the day.It’s hard to take time for us when our children needs us so much.Read a book, take a bath, play on Facebook, find something that is selfish and just for you, for at least twenty minutes every day.Even if it’s after your kids go to bed, and making yourself take the time before you go to bed.

The last thing I suggest is starting a blog.It may not be for everyone, but I suggest it mostly so you can get out some of those pent up feelings that you don’t want to let out, because it’s not good to hold that stuff in.It can be a private blog, for just your eyes, or a very public one where you share it with family and friends to keep them updated.If writing is not your thing, that’s fine.Just do it for yourself, most of you will find it therapeutic.Who cares if no one but you reads it, you aren’t doing it for readers, you are doing it for yourself.If you go public with it, it’s also a great way to get awareness out about your child’s medical issue.Even if you go public, you don’t have to use names, or locations.Give your family a cute nickname, call each of your kids something else.Information you share is up to you.And there are places of support for bloggers for Unique Families.It’s always nice to be able to talk to other families who understand a little, or a lot, on what you and your family might be going through.

Most of all, take time to capture memories with your children.Photos, mementos, maybe even start a scrapbook.It’s amazing how fast they grow up, how much they change, and it’s wonderful to sit back some nights and just take a walk down memory lane.

Our children are everything to us.It’s amazing how, once they are born, it’s not about us anymore, it’s all about them.

He just LOVES the stuff!! And he's VERY picky about what he sleeps with, what is around him or on him at night, especially on him.... if I cover him up with another blanket other then his beloved Banks... then he will 75% of the time, wake up with in 5 minutes and scream or throw it off.... tonight, I put the "snake" by his head, and he had the dino, and I put the lap pad on top of him over his blanket.... didn't... hear...a ... peep... from him!!

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Nathan started school - for the second time - last week. Incase you didn't read about it - his first preschool was very dull and not very inviting. He went through some testing for his speech, etc, and he got put in a great classroom with a great teacher, the room is really inviting and welcoming. It's a small classroom, so he has more one on one attention right now. Well, even though we aren't in that school district, because he's on an IEP he can get bused there because that's where the school district placed him. So....today was the first day that the BIG BUS picked him up.

All morning I was fretting about how he was going to take it. I was expecting tears, clinging and especially him shaking his head and telling me or yelling NO .... I never expected what happened!

To begin with, I talked with Nathan... told him he'd be meeting a new friend, and how he'd be riding on the bus, and trying to prepare him for it.

So when the bus came, and I opened the door.... HE RAN before I could even get my shoes on....

By the time I lifted my camera.........

He was all the way down the sidewalk.... threw open the gate and everything.... he didn't bother waiting to get his jacket on or get his backpack, he was just gone!! Then he stood right outside the door of the bus and waited....

And when he opened up the door, Daddy was just catching up to him with his jacket and backpack...

Daddy came and grabbed the camera and took pictures of him from the other side of the bus, where his seat was. He said he was waving "Bye" in this picture...

Little Man....on a BIG BUS...

The last picture I took ....

Kaedyn and I cried........... seriously, we cried.....

And then when he got home.... Little Man getting off the bus....

Going down the bus steps all by himself.....

He got off the bus and turned around and looked at it like "Can I get back on now?" and then when I directed him to the gate, he paused ... like.... "this isn't what I had in mind" ...

Master Noah had pop'd out of the house and asking "Nathan did you have a good day?" ...

And then the sweetest moment...........

Seriously though, he seemed to have an AWESOME day at school. It THRILLS me to the core that he's doing this but it scares me to death too! Which is so silly but he's getting big but he's still so little. He's almost 4 and still just the size of a 1 year old to 18 month old.... But he is doing AWESOME and what parent wouldn't be PROUD!!!

Monday, January 17, 2011

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Thursday (1-13-11) on his 3rd day at his new Preschool .... Nathan almost made me cry! They trace their names every morning in school.......

This is something we've always worked with Nathan one... we usually use the magnetic doodle strips, or just crayons and paper.... whatever.... but we're always doing this with Nathan.... saying each letter as we write it....

So this isn't something foreign to Nathan...

So the first day, I helped him write his name.... his hand inside mine.... me working the letters...

Day two....... Daddy said that he helped him (like I had the day before) but that Nathan had done the last N all by himself.......

So ...... Day Three....... I didn't touch the marker at all!! He was so excited to be at school, you have NO IDEA how much this just thrills my core. It's amazing to see him enjoy school, because he didn't at the other school. And so I let him take the lead........ he picked up the marker, and I helped him with the cap... and he wrote (traced) his name..... all.......... by.......... himself!

He doesn't exactly finish his A's but... hey.... for a first time all by himself, I say ...... it's PERFECT!

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So ..... Nathan has been diagnosed with Autism now, officially - even though.... we've suspected it for a long time, it's still....... hard.

One of the things I've noticed, is my wrist pad for my computer, I don't have a gel one, I have one with beads in it. So he constantly is swiping it from my desk and wearing it around his neck, kinda like a scarf....

So I already get that the weight thing is a soother for him......

So ...... after the "official" diagnosis ... I was doing research and came across the Weight Blanket .. and I thought, that makes sense!!

So one of my best friends .... my sister from another mister ... muahahhahahaa..... she just started to sew and she LOVES it.... she even started a blog to chronicle her new adventures! Adventures of a Sewing Noob

so I asked her if maybe she wanted to try her hand at making some weight items for Nathan, who is her Godson. (Well, Nathan has 4 Godparents, and so does Kaedyn.)

So ...... she was all over the idea and started to look up items also ...

So she made Nathan a few things. One she filled and we have to finish (I think?) and the others we have to fill and close up :) This is what she did...

Here is the snake she made...

Here is the dinosaur she says she mangled... LOL.. but she knows how much he loves dinosaurs and she did a quick cut of one...

Here is the lap blanket that she made for him, which I have to say....... I absolutely LOVE!!!! It made me cry, I was so touched that she personalized it.

The stitching around his name...

So Mom and I went out looking for some beads and such to fill stuff with. She started looking at patterns too and we picked up a couple ... The first one is for a sling so I don't have to cocoon him in my blanket all the time, and I can have something to take with. The second one is the fun blankets we're going to do, Nathan wants the dino (of course) and Kaedyn is going to get the turtle eventually.... and then the bottom one is some animals we are going to do like the snake. It's going to be important to have different ones depending on his mood, and also have a couple in different places.

So we picked up material for Nate's blanket, and this is what he picked out....

So, the dino material he LOVES ... he's been using it around Nana's house. Nana is thinking about just making him a blanket out of it... instead of the dino one.. and then the red and purple were ... he tried to talk us into pink, because he seems to like pink a lot... but I talked him into purple which is the color he seems to love....

Thursday, January 13, 2011

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Imagine my shock........ when the DR said that today at his appointment. "According to the MRI... he is missing (some) of his Vermis" ...

Vermis, btw ...... is Latin for "Worm"

Part of my son's WORM is missing ......

::: deep sigh :::

We have known there were issues with Nathan's Cerebellum since before he was born. His 20 week ultrasound showed a cyst in the brain that they quickly labeled as Dandy Walker ... It was confirmed after birth, and everything else, and he's had a few scans over the years...

He just had an MRI done with in the last two weeks.

We haven't gotten the results yet. We thought we had a Neurology appt but it turned out it was a Neurodevelopmental ... and we had the Autism Clinic set up for today, which was further in the process then the other one would have been ... however, I really liked the DR.

So ....... issues with the cerebellum.... that part of the brain has a hand in the following things.... motor control, balance, cognitive functions - such as attention and language, emotional functions such as regulating fear and pleasure, coordination, and the sensory systems.... The Cerebellum is the pink thing under the brain on the picture below...

So ... today, the DR says to us "He's go the Dandy Walker, right?" and I said yes.... he asks a few more questions... and then says something about "cleft palate" and we're like, he has that. He's like... "hummmm" ... ya know how DRs do that .... and then he says that it's possible that Nathan may have something called Jouberts Syndrome rather then the Dandy Walker. Apparently Dandy Walker is sometimes mistaken for what turns out to be Jouberts Syndrome .... ('it's French - Joe-Bears) ...

We don't really know what this means for him...... but he's going to start seeing a DR who specializes in disorders of the cerebellum....

Then he tells me that (I'm not sure if he said part of, but I think he did) .... part of his Vermis is missing...

Now, I don't know if they didn't see the missing piece until this scan because he was previously to small... or if they didn't mention it... or what.... but no matter ... I didn't automatically go to part of my son's brain is missing cuz he has a fluid filled cyst in his head..... years ago.......... so this - indeed - came as a HUGE shock to me today. HUGE.

I could cry ........... huge!

What does this mean for him? I don't know. It's OBVIOUS his autistic symptoms stem from his medical issues, but in order to get some services he needs, he really does need the diagnosis. Regardless of the reason why, he has autism.... and I have a broken heart....

Isn't it amazing how one word can change your whole world. Don't get me wrong.... I mean, we've been expecting this for the last 6 months, questioning it for about half of Nathan's life. About 18 months ago, we suddenly realized that the the funny spinning he does, the hiding in whatever small space he can find... wasn't just him being cute.... that.... his lack of eye contact at times wasn't just him being shy.... that his needing a routine was more then comfort, and that his melt downs were more then just temper tantrums ...

It was obvious to me, even if he didn't have "classic autism" he was somewhere on the spectrum.

It was OBVIOUS .......

And we've spent time just hoping we were wrong........... but knowing, deep deep down .... that it was right.... it fit....

A couple days ago, we were at the DR and he laid down on his back and just started to spin around in circles .....

He melts down, he needs to be wrapped up in his blanket or my blanket and held real tight and he'll calm down, he folds over when he's uncomfortable....... like this ...

Which is what he was doing today, along with being held in his blanket....

Today ... it became official... he is on the low end of the spectrum but he does have PDD .... Nathan has officially been diagnosed with Autism and ......... even though it was expected, it crushed my heart....

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So yesterday (1-10) was Nathan's FIRST day in his new preschool......... he goes in the afternoon!

Of course, being in the afternoon........ during his possible crash time............ we run into this problem... he... fell........ asleep....

I woke him up and said "Nathan, want to go play... .want to go to school? It's time to go to school" and he said "NO" and started to cry. Luckily we had a few moments to hang out before going into his classroom, so there was a lot of cuddling and a lot of reassuring and a lot of coaxing... but he did NOT want his picture taken......

And there was a lot of him cuddling into my neck...

Lookie his little backpack.......

Sitting on the curb pouting ....

But we got inside and he just cried and cried and cried.... I showed him his picture and name on his hook... and he kinda liked that but wasn't really impressed..

Nathan's stuff on his hook.....

He didn't want to write his name, so I helped him trace his name... and then it was time to color, and he didn't want to do that.... so I colored the apple, and I tried to get him to help me color the fire truck, but he didn't want to do that, and his teacher colored his cherries... and ... he wasn't interested at all .... but when his teacher said "okay, it's time for playdoh" his FACE LIT UP ........ he loooooooooooooooooves Playdoh!

That was the turning point for him. He started to have a little fun. Then it was Circle-time... and music ... and his hands were clasped over his ears most of the time. I got such a kick out of the days of the week song .... it was in the tune of the Addams Family ...

If you haven't heard it ......... here it is......

I ended up staying for the first hour (it's 2 1/2 hour class) ... and then I managed to sneak out ... and he apparently had a wonderful time for the rest of the day.

Nathan was worn out when he got home. He fell asleep with his cuppie of root beer (a treat) ... he slept ALL night too - we woke him up to change him (PJs and diaper) and to give him his pokey - but he went right back to sleep.

Today was his second day of school and Dennis took him. He said that he got really excited when he saw the little trailer that is the temporary housing for his preschool room. He went into class... he wrote his name and even did the last N on his own and did it like a champ! His Daddy was super excited and impressed with that. (We write his name a lot with him) ... and just over all he had a great day it seemed. AND when he went to pick him up, he creeped in and saw him excitedly PARTICIPATING in this song.......

Which is one of my FAVORITE of all time songs from when I was little and in school! I am so excited that he didn't cry today (like he did everyday at the other school) ... and that he is participating in the songs...... it's amazing to me and excites me so much!! I love that he is enjoying school this time around, that we found what I hope proves to be a WONDERFUL fit for him! So far it seems that it is!!

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THERE ARE SPECIAL EDITION NEWSPAPERS, THINK OF SPECIAL NEEDS CHILDREN AS SPECIAL EDITIONS

HEALTHY CHILDREN ARE LIKE DAISIES, THEY JUST NEED THE BASICS OF CARE – FOOD, SUN, WATER

CHILDREN WITH SPECIAL NEEDS ARE LIKE ORCHIDS – THEY NEED THE BASICS AND MORE LOVE, CARE, NURTURING, ETC TO GET TO SURVIVE, BUT THEY ARE JUST AS BEAUTIFUL AS THE DAISIES.

Every Little Bit Helps!

Help My Boys Get To Disney!

Hopping the Blogs

In the Garden of Motherhood, I was given Unique Flowers... ones who weren't made quite like the other flowers... but are loved so much more because they are my own special blooms!

* * * * * * * * * * * * *

My children are unique flowers... just because they have "special needs" doesn't make them any less who they are, any less amazing... their fights have been true miracles, and in my eyes ... their lives are as delicate as a snow flake, no two the same, landing on your warm skin... you must take care to meet their needs.. as their petals thrive and bloom... they are no less beautiful then everyone else .. they are just unique.... individuals.

Ted.com
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Check this out when you have a minute. Such a blast!!!
http://www.ted.com/talks/rick_guidotti_from_stigma_to_supermodel.html

5 years ago

Help the Animals :)

Ongoing Fundraising ....

We are currently running a fundraiser for our kids, Nathan and Noah - who both have different rare genetic disorders. Please take a moment and read about them! We are trying to raise money for some things insurance doesn't cover, and to get to a conference next summer (2014) if we can. We are focusing on two things right now, both costing over $5,000. If you can donate, wonderful, every dollar counts and is greatly appreciated. Please click the link and check out ourFUNDRAISER.. You can read their stories more by clicking on the page links above...

Fundraising for Noah & Nathan

Our Fundraiser on Fundrazr...

Giving ...

If you would like to donate in another way, like sending us a donation or have a fundraiser for the boys, please contact us for further information: MammaRazzi13@aol.com

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About Me

I am a loving Wife and the mom to 4 boys, a daughter-in-law, and 1 step daughter. Nonna to two grandbabies.

Calahan (22), engaged to Shila (23) Grandbabies: Clairah (4) Elly (2)

Noah (16)

Jessa (13)

Nathan (10)

Kaedyn (9)

Noah and Nathan both have extensive medical issues. Noah has a rare genetic disorder called Mosaic Trisomy 16. Nathan has a lot of medical stuff going on, a very long list, but no main diagnosis.

I am a photographer, a writer, an all around creative sort. I have CFS/Fibro & at-times severe Psoriasis issues, diabetes, and back issues (degenerative discs, etc) . My husband has severe back issues stemming from a fracture in his back, and also Fibro.

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CALAHAN JOSEPH ~ January 5, 1996

Calahan was a surprise.. My ex-husband and I haphazardly decided to try to have a baby after we got engaged. I was only 18, he was 19 ... and it was silly - I was ready for a baby but he was NOT. Course you don't realize that until you fast forward yourself through life. He was due December 25, 1995 - Christmas Day. He was born January 5, 1996... coming overdue and in at 8lbs 7oz and 20 1/2 inches long.

Links For Calahan

NOAH ALEXANDER ~ February 1, 2002

Noah was a baby faught for... Found out at 4 months pregnant that he has a rare genetic disorder called MOSAIC TRISOMY 16. He was due St. Patricks Day 2002. He was born February 1, 2002... coming in at 1lb 12.2oz and 13 3/4 inches long. He was a fighter from the moment of conception.

Complications at Birth: Low Micro-Preemie Birth Weight, On Vent for 40 hours, Brachycephaly craniosynostosis, enlarged right kidney, ASD & VSD (3 holes in his heart all together), eye pupils shaped like footballs, Hypospadious, Natural Circumcision, Hyperbilirubinemia, he had both Apnea and Bradycardia (Brady’s he had, Apnea he didn’t start until a few weeks before his due date)... Brain scan at one point showed some fluid on his brain that was later declared a "variation of normal", umbilical & double groin hernias ...

Complications Past & Now: Small size (At 5 he was 30lbs), mildly physically delayed (mostly due to his small size)... he has dealt with and continues to... oral sensitivity issues (taste & texture)... sound sensitively issues... speech delays....low muscle tone (very bothersome)... hearing loss in his left ear (hearing seems to have gotten worse - 2007)... surgery to correct the hernias @ 6 months, surgery to correct the hypospadious @ 13 months, surgery to put tubes in his ears at 2 years.. went through various gastro testing due to mysterious vomiting issue...

April 2007 - got C-DIFF bacterial infection from antibodics and started to go into Kidney Failure, he almost died.

April 2009 - Noah's heel cords are very tight again, and he needs stretching out every day. If his tone is not better, then by early next year he'll have to be casted for 3 weeks.

August 2009 - Noah has been having increasingly more blood in his urine showing that his kidneys are getting worse. Right now the kidney tests are coming back okay but it's being kept an eye on.

March 2011 - We found out his tone issue isn't just below his knees but effects his whole leg, so they took casting off the table. Also, he doesn't really let anything hold him back. He doesn't really run, he sorta side skips quickly sometimes, and there are times he will actually run, but over all, Noah is just Noah. His kidneys are just something we're going to have to keep an eye on. Noah ended up being hospitalized for a night at Seattle Childrens when he had Influenzia A ... it was attacking his kidneys and he was spilling out a large amount of blood in his urine, his kidney's bounced right back but it was a scary moment. His hearing seems to be getting worse so he's got some hearing tests coming up.

August 2011 - Noah fell down the stairs to our apartment and broke his nose and had to have surgery to fix it. He couldn't go outside and play for awhile due to everyone being afraid he might hit it and trying to avoid another surgery.

September 2011- Noah failed his hearing test in his left ear. Not only is it typical hearing issue but it's in his ear bones too. So it's a lifetime loss, it's not just because he gets fluid built up. So he was fitted with a hearing aid on his left ear. He was super excited to get it, but once he got it - it was very weird and sensory issues ... it was overwhelming for him. So he's only wearing it for school at the moment, even that was a fight.

JESSA LYNN

Jessa is my step-daughter... My Husband's baby girl from a previous relationship. We met soon after he split up from her mom. I haven't had the pleasure of meeting her yet, but I love her, she is part of our family and will be no matter what!!

NATHAN PATRICK ~ April 19, 2007

Nathan was a surprise.. My Husband & I were going to start TTC the month following the month we got pregnant... we found out at 20 weeks, there were complications... with another pregnancy... needless to say, I felt useless and broken. He was due May 13, 2007 - Mother's Day. He was born April 19, 2007... coming in at 3lbs 4oz and 15 3/4 inches long.

Complications Past & Now: Came home on an NG Tube (ended early June '07)... Feeding Issues .. Oral Sensitivity... Torticollis ... Hydrocephalus (August '07, Sept '07)... a Bifid Uvula (explained to me as an upside down heart shaped uvula), he also has some tone issues where they are very loose. Undescended testicles....Aortic Septal Defect...

9 months old: Poor kid has his first Ear Infection, pneumonia, his first diaper rash AND cut TWO teeth all in ONE WEEK! Poor baby!!!

updated April '09 .. there are now suspicions of Russell-Silver Syndrome, hypothyroid, and he has been showing some signs of some sort of Autism (has genetic tests pending, along with more blood work to be done and a evaluation with the Autism Clinic pending) ... He has officially been diagnosed with Failure to Thrive. He also has mild Scoliosis, and is most likely going to start HGH (human growth hormone) in the Fall.

updated August '09 ... All of Nathan's genetics tests have come back fine, including the RSS. Not sure what that means exactly since I read that the genetics test may not be 100% ... and the way he seems to fit. However at this point, it just seems to be one more diagnosis in a long line. He had tubes put in his ears in June and seems to be doing much better with hearing and slowly progressing with speaking. His appointment with the Autism Clinic is Sept. 16.It was determined that Nathan would need more testing before officially diagnosing him with "Autism" however there is more signs there to warrant further testing.

update November '09 ... Nathan had his first hypospadious surgery, and had his undescended testicle on his right side moved down to where it is suppose to be. It went well for the most part, but he came home with a catheter which had to stay in for several days. He'll have to have the second surgery in about 6 months.

Update April '10 ... Nathan has officially been diagnosed with Russell Silver Syndrome

Update August '10 ... Nathan has been going through a lot. He had started Autism testing early in the year, but we stopped due to the fact that we were making a big move from WI to WA State... we have re-started the process of the Autism testing here. We also have talked to his new Urologist about the 2nd surgery for his hypospadious, and in addition, he will need a 3rd surgery for his undescended testicle that has gone back up, they aren't sure if they can try to move it down again or if it'll have to be removed. We also ended up going to the endocrinologist for his hypothyroid and to discuss starting HGH (human growth hormone) after his official diagnosis of the RSS. The process has begun and we'll be going to "train" to give him the daily injections soon.

Update September '10:So ...he had his 2nd hypospadious surgery, and it ... for the most part ... went well, but we had the blessing of dealing with another catheter ... at least this time we didn't have to deal with the bag and whole deal, he just had the tube there so it could leak into the diaper. We actually had to double diaper him, the inside diaper to catch the poo and there was a hole for his plumbing to be supported (due to the surgery) where it could leak into the outside diaper. It was a very very rough week after the surgery, and even after.... but we managed, and survived. He was in a lot of pain. A little while after, we discovered that he had a couple of holes (fistulas) open up and so he has urine streaming through a few holes... so, hopefully he doesn't need a 4th surgery! We'll see though. But ... Part 2 is done! He also had dental surgery to put caps on all of his teeth due to them all rotting thanks to his high calorie diet. :/

Update January 2011:It's official, Nathan has been diagnosed with Autism (specifically, PDD that they believe is due to his multitude of medical issues) ... which I completely agree with. IN addition to that, it has been mentioned based on his last MRI that he is actually MISSING some of his cerebellum, specifically the Vermis .... and that he may not have Dandy Walker, but rather Jouberts (pronounced Joe-Bear's) Syndrome... we are seeing one of the nations #1 expert genetics Doc about it. So we shall see..... we... shall... see.... (no Jouberts Syndrome, sticking with Dandy Walker Varient & RSS)

Fall 2011 ... We've seen cleft palate specialists and they said that if he failed his hearing tests (which he did) that he would have to have surgery on his sub-mucus cleft palate. Also - a speech lady came in, she feels he has a speech disorder called "Dyspraxia" ... and she feels he's going to only be able to communicate properly through communication devices.

December 2011 ... Nathan had a one hour EEG done and then a 24 hour video EEG ... we recently saw Neuro and found out everything is a-ok :D No seizure activity found.

May 2012 ... My amazing Nathan has been through a lot this month! He has been approved to get a communication device, which we won't get for 4 to 6 months (thanks to insurance red tape) and on May 25th he had surgery to repair his cleft palate, got tubes in his ears again, and his uvula was patched. Now he's home and recovering!

September 2012: After a little debate and several failed hearing tests, Nathan was fitted for hearing aids in both ears. He will be getting them in November.

KAEDYN PHILLIP RUSSELL ~ September 9, 2008

Although I we knew we wanted another baby, that pregnancy test turning positive was a shock. Things were crazy after we found out that we were pregnant again. Dennis was worried about money and my health, and everything else. At 18 weeks we got the perfect amnio results showing everything was genetically fine and it was indeed our FOURTH boy!! I did get sick again, but I felt GREAT! For the first time I developed GDD, and I flirted with Pre-eclampsia like usual. But over all the pregnancy was great and I even ended up going into labor on my own 10 days before his September 19th 2008 due date. We had gone in for an amnio to check his lungs to see if he could be delivered and found out I was having contractions every 2 minutes and was 3 cm dialated! Oooooh boy! Things moved quick from there, and I was in the c-section room before I knew it. Kaedyn Phillip Russell was born September 9th, 8lbs 3oz and 18 3/4 inches. He started crying before he was even out of the womb (or had his mouth clear!) ... and he showed the world he had a GREAT set of lungs by not stopping until he was in my arms. He also baptized everyone showing his boy parts worked REALLY well over and over and over.. just when you thought it was done, it started back up!

Pregnancy Complications:(Mom) Gestational Diabetes, Hypertension.... Limited Activity to complete Bedrest, (Delivered via c-section - planned - but moved quickly after found out I was in labor)

January 2010: Kaedyn had a scare with his heart last fall. His murmur got load and everything turned out okay but it did freak Mom out a lot. And his eczema is horrible. It's full body and I can't seem to get rid of it for him. Now we've been back to the DR about it and got a stronger ointment to put on it (with steroids) and a ton of different lotions we bought to try to see what helped him. After only a few days on the new ointment he's much better.

April 2012: Kaedyn is taking after me by more than just looks! He has apparently grasped my allergies too. After a few days with extremely bad hives, he had to go into the allergist. He definitely has allergies, and I suspect it's to more than just dog, cat and grass ....